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Posts by Christy Sillman

We have had dozens of bloggers since this blog began who have been so open with their stories. If you are interested in blogging, too, we'd love to hear from you. Please email info@achaheart.org.

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Psychological Aspects of Living with CHD

by Christy Sillman on Tuesday, Aug 30, 2022

For the past few years, I’ve been part of a writing group for a Scientific Statement from the American Heart Association on the psychological outcomes and interventions for individuals with congenital heart disease (CHD). Spearheaded by Dr. Adrienne Kovacs and Dr. Lazaros Kochilas, our goal was to describe the psychological impacts of CHD across the lifespan and provide strong evidence to support ongoing mental health services and interventions.

Professionally, this endeavor has been incredibly fulfilling as I’m passionate about the holistic care of CHD patients, and I’ve been able to collaborate with people I deeply respect and admire.

Personally, I’ve had an emotional reckoning of sorts.

The ACHA Community, Together at Last!

by Christy Sillman on Friday, Aug 13, 2021

It is said that necessity is the mother of all invention, and we’ve certainly experienced some degree of this since the spring of 2020 when the COVID-19 pandemic forced us to dramatically adjust our ways of life. For ACHA, one of the greatest impacts was on the planned National Conference in 2020.

Finding Hope Within the COVID-19 Vaccination

by Christy Sillman on Thursday, Jan 07, 2021

I received the first dose of the Pfizer COVID-19 vaccination two days before Christmas 2020, and I underestimated the emotion I would feel while receiving it (I since received my second dose this past Tuesday). As an ACHD nurse practitioner, I’m not directly caring for COVID-19 patients, but I do walk into the hospital every day fully aware that there are many COVID-19 patients on or near the units I round on.

The level of vigilance with PPE shortages and helping my patients and myself stay safe has been exhausting. As an ACHD patient, I know what it is like to be critically ill on a ventilator. I have heightened anxiety about COVID-19, because I know what is at stake. This vaccination feels like a beacon of hope within the darkness that has clouded the past year.

Defining CHD

by Christy Sillman on Wednesday, Oct 14, 2020

One of the most prominent debates in the congenital heart community is the definition of the acronym “CHD.” Let me preface this blog by stating that I recognize that your preference is deeply personal, and I don’t believe there is a right or wrong answer to this debate. Whatever side of the debate you fall upon, that is what is best for you, and I completely respect your choice.

COVID-19 and the Impact on ACHD Patients

by Christy Sillman on Tuesday, Mar 24, 2020

I can’t be the only person who wakes up every morning and thinks to myself, “Maybe it was just a bad dream? This can’t be real life!”

The SARS-CoV-2/novel coronavirus/COVID-19 crisis has completely upended our way of life. It’s all anyone is talking about. Where I live, in California, our entire state of 39.56 million people are now on a “stay at home” directive in an attempt to decrease the sharp upward curve of severe cases that could overwhelm our healthcare systems. Schools are closed, all businesses besides essential services are closed, and our legendarily clogged freeways are now actually functional.

ACHA ACHD Program Accreditation is NOT a Competition

by Christy Sillman on Monday, Oct 23, 2017

Historically, when searching for appropriate cardiology care, either as a child or an adult, we’ve had to rely on national “rankings” through lists like U.S. News Reports & World Report rankings, or through our own analysis of the transparent information presented in the ACHA program directory. It’s no wonder then, that when the first wave of ACHA ACHD Accredited Programs were announced, many patient’s first reaction was to view these accredited programs as a sort of ranking comparatively to other programs. I saw many comments on social media that included sentiments such as “I can’t believe ____ program wasn’t included!” or “where is _____ program, this doesn’t seem fair!”

The Dawn of a New Era in ACHD Care

by Christy Sillman on Thursday, Jul 21, 2016

I’ll never forget the moment I first realized I was receiving inappropriate cardiology care from a general cardiologist and discovered the Adult Congenital Heart Association (ACHA). I browsed the ACHA Clinic Directory and was so thankful that I had found this resource, but was also a bit bewildered. How does one become an adult congenital heart disease (ACHD) cardiologist? If I have several choices in my state, how do I know which ACHD program is better equipped to handle my care?

Medical Home Sweet Home

by Christy Sillman on Tuesday, Apr 05, 2016

[Editorial Note: I am writing this blog from my nursing perspective]

One of the biggest issues in CHD care that is often not discussed is the lack of an appropriate “medical home.” What is a medical home? It is a primary provider of care that will look at their patient in a holistic manner. Some patients feel more comfortable with their cardiologist acting as their primary care provider, but I’m here to advocate for a non-cardiologist primary provider.

The Salt Struggle is Real

by Christy Sillman on Tuesday, Dec 15, 2015

It’s that time of year—casseroles, soups, decadent dinners, parties out, and treats everywhere. As a heart patient it’s my most challenging month to keep my salt (sodium) intake under 2,000 mg a day (that’s the definition of a low-sodium diet). Lately my belly has been protruding, my rings have been squeezing, and my socks have become tighter. The salt struggle is real, folks—how do we get through the holiday season without fluid overloading ourselves???

Knowing What to Know

by Christy Sillman on Monday, Sep 14, 2015

One of the hardest things about being an adult with congenital heart disease is knowing what to watch for and when to call the doctor. For the longest time I hesitated before calling my doctor for something I was concerned about. I didn’t want to bother him, I didn’t want to seem annoying, and I wasn’t sure if my issue was worthy of a call. Now, as the person who receives the calls, I’m here to tell you the importance of calling.

Expiration Date

by Christy Sillman on Thursday, Apr 16, 2015

Many of us have asked our doctors THE question:

“When will I die?”

“How much longer do I have?”

“Does _____ test result mean that I am dying?”

It’s on all of our minds, and I know many of us have actually received answers to these questions—and then surpassed the physician-stamped expiration date. I know I have, on multiple occasions.

Your Role in Your Healthcare Team

by Christy Sillman on Thursday, Feb 05, 2015

The patient is the most important member of the healthcare team. You know your body the best, you’ve been living with congenital heart disease, and you’ve got the firsthand account of your medical history. For some people, managing their health can be a full-time job, and I want to share some ways you can help succeed in collaborating with your team.

Authorizations, Appeals, and Insurance Claims… Oh My!

by Christy Sillman on Thursday, Nov 06, 2014

It was such an honor to present at the 7th National ACHA Conference, and although I am happy to share the slides from my presentation on getting insurance to work with you, I want to summarize my presentation here.

The main message I want everyone to know is that insurance companies, like many people, do not understand congenital heart disease. Luckily, we have guidelines and will soon have medical board certification to help the insurance companies navigate our care – but they need a lot of education.

Catching Zzzs for Those with CHDs

by Christy Sillman on Wednesday, Aug 13, 2014

Sleep is incredibly important to our health. Without a solid 7-10 hours of sleep a night we’re cheating our bodies of the renewal process necessary to keep our body in an optimal state. Many CHDers tell me that they struggle nightly with getting their Zzzs.

There can many factors as to why we can have trouble sleeping—orthopnea (shortness of breath when lying flat), acute or chronic pain (from surgeries), anxiety/depression/PTSD, obstructive sleep apnea, and certain medications can inhibit melatonin production—the natural chemical that helps us sleep.

Medications, Side Effects, and Safety

by Christy Sillman on Tuesday, Jun 10, 2014

I feel really lucky that for most of my life I wasn’t on any medications aside from the prophylactic antibiotics I took prior to dental procedures. When I sought out care from my fantastic ACHD doctor and finally got the care I needed, I was suddenly faced with starting multiple heart medications because my heart health had been neglected for so long.

For many patients, their ACHD care involves medications. As an ACHD nurse I often find myself counseling patients on medication compliance, safety, and understanding the side effects. I’d like to share some of my tips.

Heart Mom 2.0

by Christy Sillman on Friday, Feb 21, 2014

I thought pregnancy/labor was going to be the hardest part of being a mother with congenital heart disease, and let me tell you, it wasn’t exactly a walk in the park—but what I’ve found most surprising is how challenging motherhood itself would be in the face of my CHD.

Regardless of how you become a parent – old fashioned baby-making vs. surrogacy vs. adoption – you never really know what you’re getting into until you’re there. It’s a club only parents understand. I thought working 12-hour night shifts in a busy pediatric ICU was motherhood “training,” but little did I know that I’d later view those 12-hour shifts as my mommy breaks!

My December Game Plan

by Christy Sillman on Monday, Dec 16, 2013

My January heart checkups are historically the worst. At first I thought it was just a strange coincidence, but now I’m starting realize how the fall/holiday season really takes a toll on me. This year I’m trying something new – I’m trying to be more heart healthy and conscious of my usual pitfalls.

It’s a lot easier to convince yourself not to work out when it’s freezing cold outside or your to-do list seems impossibly long.

Here is my December “game plan” for keeping my heart healthy:

A Letter to 18-Year-Old Christy, Circa 1998

by Christy Sillman on Thursday, Oct 10, 2013

Dear Young Christy,

It’s 2013, and guess what? You’re alive! Not only are you alive but you’re living a life you never could have imagined was possible. Spoiler alert – you have a loving husband, a gorgeous child, and a fantastic career. I know you’re really confused right now after open heart surgery, but I wanted to give you some tips to help you through the next few years.

Passing the Torch

by Christy Sillman on Monday, Aug 26, 2013

I recently realized that home feels different. Not my actual house, but the people who make up my emotional home. I’ve always felt safest with my parents. I felt nervous traveling without them, and always wanted to live close to them. It’s taken 12 years but the “CHD torch” has been passed—my husband and son are truly home to me now.

I know that this emotional transition is part of what “growing up” is all about, but when you have CHD it’s different. My parents have been through a lot with me. They’ve been by my side every step of the heart journey. Navigating and learning through the journey together has developed a stronger than average bond and a sense of security I never really had with anyone else—I guess that’s what unconditional love is all about.

Finding Balance

by Christy Sillman on Thursday, Jul 11, 2013

I know I’m not the only one who experiences some pre-appointment anxiety. Living with CHD involves periods of normalcy followed by extreme upheaval, and we never know when that upheaval will come. We’re constantly waiting for the “other shoe to drop” and regular cardiology appointments are often where those shoes fall off. So, it’s no wonder that the days leading up to our appointments can be a little stressful.

High Fives to Congenital Heart Walks!

by Christy Sillman on Monday, May 06, 2013

As I reflect back on Sacramento’s inaugural Congenital Heart Walk in late April, there are a lot of things I feel like celebrating. We tripled our first year goal. My team came in second for fundraising. I felt so much support from the people in my life who walked with me as part of my team. But there’s one aspect of the walk’s raving success that I’m overwhelmed by – the local CHD community finding each other.

I spent two years as a pediatric ICU nurse in our local hub for cardiothoracic surgery, UC Davis Medical Center, and I was blessed to care for many local heart families during that time. So I knew there had to be a large CHD community in California’s capital city of Sacramento.

30 Seconds Add Up

by Christy Sillman on Friday, Mar 29, 2013

I had the great honor of traveling to Washington, D.C. to be part of Congenital Heart Advocacy Day last week. Besides being a wildly exciting adventure that I’m sure to never forget, it was also an experience that brought about great personal growth for me.

I had no idea what to expect. I’m not particularly politically minded, but knew that having a voice in D.C. was important towards our CHD advocacy.

It’s Nothing Personal

by Christy Sillman on Monday, Mar 04, 2013

I’ve decided to leave my local cardiologist, and it really feels like a messy breakup. I’ve given this cardiologist several chances to regain my trust and rekindle the working relationship we started off with, but there comes a point where enough is enough and you just need to walk away.

Advocating for yourself is hard. You sometimes have to be the “bad guy” and can often feel like you’re doing it all wrong. I think we’ve all been there—whether it’s calling for test results, asking for second opinions, or putting in special requests. We put ourselves out there hoping they’ll understand our needs.

The Heart of Community

by Christy Sillman on Wednesday, Jan 23, 2013

I love this time of the year. New beginnings, making yearly plans, annual vacation requests, and best of all, heart week.

I’m new to celebrating CHD awareness week; in fact, I’m new to the CHD community in general. Just three years ago I discovered ACHA. Prior to this discovery I had one friend with CHD – one!

Hello? Can You Hear Me?

by Christy Sillman on Monday, Dec 17, 2012

You know that list they’re required to read to you before surgery? The one that states all the possible complications—I mostly remember death or dismemberment. I closed my ears, swallowed hard, and signed the paper with a silent prayer. I don’t, however, remember them saying “you could lose the ability to speak.”

Prior to my last surgery I was quite a chatty person. I used to talk all day and night to anyone who would listen. As a teenager my parents had to get me my own separate phone line and I practically had the phone glued to my ear. Then, at 17, the height of teenage talkativeness, I had my pulmonary valve replaced, and I woke up from open heart surgery without a voice.

Super Woman

by Christy Sillman on Wednesday, Oct 31, 2012

I have a problem saying "no" to people. I don't know why, but I just feel horrible. You could ask me to drive you across the country and I will actually take a second to think about if I can make it work—there's no possible way I could actually do it, but I'd consider it for sure.

I just love helping people. I get a high from making other people's day better/easier/happier. That's why being a nurse is a calling more than a job for me.

Control Freak

by Christy Sillman on Thursday, Sep 27, 2012

I’ll admit it—I’m a control freak. I’m a type-A, people pleasing, perfectionist wacko. I don’t know if it’s from growing up around medical personnel (they’re generally all type-A people) or if it’s genetic, but it’s just who I am. I’m often up late at night reassessing my five-year plan and adjusting as needed. I like to plan—I don’t formulate only plan A and B, I’ve got at least through plan F prepared.

One of the most frustrating parts of living with CHD is not being able to truly plan. With the unpredictability in the nature of our disease—the periods of “normalcy” followed by huge life upheavals when there’s a new procedure or surgery we have to face—it’s sometimes easy to feel out of control or depressed. When I was diagnosed with cardiomyopathy after my pregnancy I was devastated and fell into an angry depression; I was focusing on what I couldn’t control and I felt helpless.

Anxiety. Depression. Panic Attacks. OH MY!

by Christy Sillman on Friday, Aug 10, 2012

The weekend before I entered junior high school my parents took us to the Great America theme park here in Northern California. It was there that I experienced my first anxiety attack, and I quickly fell down a dark hole of anxiety and depression that kept me confined to my home for almost two months. I felt so alone, and so shameful of my mental health issues. No one, not even the psychologists they sent me to, mentioned that anxiety, depression and other mood disorders are common in people with CHD. It would have made all the difference in the world.

The Face of CHD

by Christy Sillman on Wednesday, Jun 06, 2012

Where is our Michael J. Fox? What he’s done for Parkinson’s is amazing and commendable. He’s personalized the disease for so many out there who aren’t familiar with it. He’s owned his disease with such honor and respect.

Congenital heart disease is the most common birth defect and there are over a million adults living with congenital heart disease—why don’t we have a celebrity leading the fight for better research and delivery of care for adults with CHD?

CHD Makes Me a Better Mom

by Christy Sillman on Monday, May 07, 2012

Sometimes I can’t believe I’m a mom. It’s not that I never thought I’d be a mother—it’s just that I never allowed myself to dream that far into the future. It’s a protective mechanism I’ve utilized since I was very young. I focused my energy on the present, and tried not to get too bogged down by the long-term future. It’s the result of growing up against all odds.

That’s all changed; now all I think about is the long-term future.

An Open Letter to ACHD Cardiologists

by Christy Sillman on Wednesday, Apr 18, 2012

Note: I compiled these tips after informally polling some adults I know with congenital heart disease. I don’t intend to speak for us, but I want our voice to be heard by you—the cardiologist—because without you we’d be the lost survivors.

First off, I want to thank you for devoting your career to caring for adult survivors of CHD. It’s a specialty within a specialty and you’re on the cutting edge of lifelong congenital heart care.

Here are some things I have compiled after my informal poll that I think you should know about us:

It Takes a Village

by Christy Sillman on Wednesday, Mar 14, 2012

“I wish I never knew congenital heart disease,” posted one of my heart mom Facebook friends. I get what she is saying—that none of us chose to know CHD, but it is all we know so we’re forced to face it head on. I think about all my family members and how CHD has changed their lives and the guilt starts to sink in. It’s so silly because it’s not like we asked for CHD; it just hurts to feel like a burden.

There are heart moms, heart dads, heart grandparents, and even heart siblings who I know wish they were ignorant to a life with CHD.

But what about the heart spouses and the heart friends? These are the unsung heroes of the CHD support team. When you really think about it, they are willingly choosing to invite CHD into their life. That is something really astounding.

Heart-Shaped Awareness

by Christy Sillman on Thursday, Feb 02, 2012

February is Congenital Heart Disease Awareness Month, and I’m feeling a little stuck on how to bring about more awareness. I mean, I’m aware of CHD because I have CHD. My close family and friends are aware because someone they love (me) has CHD. But how do I get the average acquaintance to become more aware of CHD without it coming across like I’m complaining or being annoying?

What do I even want them to be aware of?

Happy New Year!

by Christy Sillman on Tuesday, Jan 03, 2012

It’s 2012! That is wild! Shouldn’t we have flying cars or be hanging out with neighboring aliens by now? That’s what I thought when I was a little girl. Sometimes I think we haven’t advanced much as a society. But when my best friend was anxiously grilling me on what the future of my cardiology needs might be, I realized that a lot has changed, especially in the field of CHD care.

Labor of Love: Part 2

by Christy Sillman on Friday, Dec 09, 2011

The moment I awoke from anesthesia with my very healthy son on my chest is something I will never forget—the gratitude I felt was overwhelming. I just felt so thankful that my body made this beautiful, healthy human and that my life was now extended through him.

Throughout my pregnancy I had frequent ECHOs, all of which were read as “stable.” Two months postpartum, my OBGYN said to me “see you next time.”

Labor of Love: Part 1

by Christy Sillman on Tuesday, Nov 15, 2011

I want to preface this blog by reinforcing that everyone’s journey is different, and just because I had a particular pregnancy experience does not mean everyone will have a similar one.

Although I was given the green light by a pediatric cardiologist to go ahead and try to get pregnant with my husband, I had to wonder how many pregnant patients a pediatric cardiologist follows. I went into my pregnancy saga full of fear, trepidation and excitement.

Investing in my Future

by Christy Sillman on Friday, Oct 21, 2011

Ever since I was a little girl I have had this idea in my mind that I wouldn’t live past 30 years old. I’m not sure exactly why, but the catchphrase of “Doctors said she wouldn’t live past three days old and she ended up living 30 years” kept entering my mind. You see, I’ve been living my life on borrowed time. Every year feels like a gift or another year of defiance, and my pure focus has been on surviving.

Born This Way?

by Christy Sillman on Thursday, Sep 22, 2011

I made a promise to myself when I was lying in the Pediatric ICU as a 17-year-old recovering from open heart surgery – I would never endure an optional surgery such as plastic surgery. I’d been through enough. It didn’t make any sense to ever put myself through surgery if I didn’t have to.

Now I’m contemplating relinquishing that promise.

Scar Wars

by Christy Sillman on Monday, Sep 12, 2011

I love how unsuspecting people are when they play a game of scar wars with me. You know—the game where someone shows off their gnarly bike accident scar and then the whole room starts comparing scars. I usually hold back, start off slow with my skin cancer scar, or my busted knee scar, and then—WHAM—I pull up my shirt a bit and the whole room goes silent. It’s awesome, and I’ve learned to use it to my advantage over the years.

Music Helps My Heart Beat

by Christy Sillman on Thursday, Aug 25, 2011

One of the most vivid memories of my last open heart surgery in 1998 was driving through San Francisco on our way to UCSF with the music blaring. I felt a pit in my stomach as I contemplated whether that day would be the final day of my life. I felt an urge in my legs to tremble but instead I was forcing them to tap to the beat. The song was “Hit Me with Your Best Shot” by Pat Benatar.

“You’re a real tough cookie with a long history, of breaking little hearts like the one in me” — was I imagining God or my surgeon when I sang along to that lyric, or maybe just fate?

“That’s OK, let’s see how you do it. Put up your dukes, let’s get down to it. Hit me with your best shot. Fire away…”

The Heart Disease Label

by Christy Sillman on Wednesday, Aug 10, 2011

I remember the first time I sat in an adult cardiology waiting room. It was refreshing to have adult-themed magazines to look at and I enjoyed the peace and quiet of the elevator music. I still stood out from the crowd, but this time instead of being the oldest patient in the room I was now the youngest. I wasn’t quite sure of what to expect when I transitioned into adult cardiology care, but I never anticipated how much I would ultimately need to advocate for myself in a world where the title “heart disease” is synonymous with coronary artery disease, or acquired heart disease.

Seeing Myself in My Patient’s Eyes

by Christy Sillman on Tuesday, Jul 26, 2011

“Why did you want to become a nurse?” is a question I get often, especially after people learn about my congenital heart disease. I’m not even sure how to answer that. Some days I hesitantly ask myself the same question.

It’s not like I entered nursing school with the final goal to be working in the pediatric ICU; in fact, I feared that unit the most out of all our rotations—well, that and the operating room. They both hit a little too close to home. My goal was to get my RN license and go work in a clinic or another non-hospital related nursing area. But something happened when I started working with patients in the hospital—I related to them in a special way because of my experiences, and they appreciated it.

Guinea Pigs

by Christy Sillman on Wednesday, Jul 06, 2011

“I apologize in advance that you are sort of my guinea pig,” Terri Schaefer told me before she posted my blog as the first on the ACHA website. It made me laugh. Doesn’t that sort of sum up the ACHDer experience—being the guinea pig?

I can think of all the medications, experiences, procedures, and surgery techniques that were used on me that were considered experimental or “new.” Some of these were breakthroughs in CHD care, such as the use of prostaglandins in the newborn with CHD to keep the ductus open while they awaited surgery. When I was born in 1980, this drug was experimental and my parents “took a chance” when their only other option was to take me home to die.

Meeting My Own Personal Rock Star

by Christy Sillman on Thursday, May 26, 2011

Patient or nurse, nurse or patient — who am I? This was a question I faced often while I attended the Adult Congenital Heart Association's national conference in Los Angeles about a month ago.

I had intentions to stretch myself between both worlds — to attend both patient and health professional sessions. After all I am both a nurse and an adult with congenital heart disease.

My name badge didn’t specify “who” I was, but next to my name badge, my role was very clear. My “zipper” isn’t that red anymore, but it is visible to those who look for it. I caught myself staring at attendee’s chests, looking, wondering… professional or Zipper Club member?

Disclaimer

The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

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